Posted by Alan We have a daughter, Sarah who has recently been diagnosed with a progressive 55 degree curve on her lower spine and 35 degree in the upper. Sarah suffers from Angleman's Syndrome a rare genetic disorder which means that she is severely mentally handicapped. She has no understanding of what is happening. We went to see an orthopaedic surgeon, to be honest, just to get his view on management of her scoliosis and were not prepared for his going straight into Sarah needs surgery as soon as possible! We expect Sarah to have her operation towards the end of August 2004, however we have (many) concerns about surgery. Our main concern, and I am sure that others will prevail, is immediate post-surgery. With no understanding, Sarah will be wanting to pull all the wires and tubes out or herself. Also we have heard that it is essential the patient remains very still? We were wondering if anyone else had experience of this kind of situation, how they managed it and any advice that they may have of dealing with this? Particularly in light of a patient, with such low understanding.
on 5/30/2004, 8:19 am
217.31.153.128
Hi.
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